American Society of Nephrology Announces Studies Examining Ways to Assess Quality of Life in Patients with Kidney Disease

Washington, DC, March 21, 2019 – In a press release, the American Society of Nephrology reports that in addition to monitoring patients’ health through specific clinical tests, physicians should also consider patient-reported outcomes and health-related quality of life, or what patients say about how they feel and what they can do. Two new studies that appear in an upcoming issue of the Journal of the American Society of Nephrology (JASN) address ways to do this for patients with chronic kidney disease (CKD).

To gain these perspectives from patients with CKD, physicians often use the Kidney Disease Quality of Life (KDQOL)-36, a survey that asks patients for their views about their health. Despite its widespread use, the KDQOL-36 was developed decades ago and may not capture all of patients’ concerns.

In a JASN study that included 485 patients with CKD, John Ware, Jr., PhD (John Ware Research Group) and his colleagues developed and evaluated an improved and briefer approach to measuring quality of life across the spectrum from early CKD to kidney failure, or end-stage kidney disease (ESKD). The team found that both 6-item and adaptive forms of this Chronic Kidney Disease Quality of Life (CKD-QOL) instrument performed better across multiple tests of validity in head-to-head comparisons with a generic assessment of health-related quality of life called SF-12v2 and with CKD-specific KDQOL-36 measures.

“Quality of life is the most important outcome to patients, and the computer adaptive survey pays attention to a patient’s answers, saves time, and doesn’t ask questions that are irrelevant to that individual patient,” said Dr. Ware. “This research brings us closer to measures of quality of life that are specific to kidney disease and could meaningfully inform the care of individual patients.”

In another JASN study, a team led by John Peipert, PhD (Northwestern University Feinberg School of Medicine) and Ron Hays PhD (UCLA David Geffen School of Medicine) aimed to increase the KDQOL-36’s usefulness for patients with ESKD by providing reference values for the US dialysis population. “These reference values will help give context to individual patients’ and groups of patients’ KDQOL-36 scores by providing a national norm to compare to,” said Dr. Peipert. “In addition, for circumstances where a single, composite KDQOL-36 score is useful, we have provided evidence of the reliability and validity for a summary score derived by combining the 3 KDQOL-36 kidney-targeted scales titled the KDQOL-36 Summary Score.”

In an accompanying perspective, Dr. Peipert and Dr. Hays noted that ESKD patients stand to benefit from a variety of new clinical and evaluation opportunities with patient-reported outcomes that will help align care with patients’ priorities and open new channels for communication between patients and their doctors. “The burden of disease for ESKD patients is formidable and impacts many aspects of patients’ lives,” they wrote. “Adopting patient-reported outcome–based approaches to manage ESKD patients’ health is a very promising way toward easing this burden.”

Dr. Ware’s co-authors include Michelle Richardson, PharmD, Klemens Meyer, MD, and Barbara Gandek, PhD.

Dr. Peipert and Dr. Hays’ co-authors include Devika Nair, MD, Kristi Klicko, BS, and Dori Schatell, MS.

Disclosures: Dr. Ware reports grants from National Institutes of Health and from Amgen Foundation, during the conduct of the study and from John Ware Research Group; and being developer and original copyright holder of generic measures used in KDQOL-36 and developer of new CKD-specific measures studied and copyright holder of improved measures developed subsequently. All other authors reported no financial disclosures.

The studies, entitled “Improving CKD-Specific Patient-Reported Measures of Health-Related Quality of Life,” and “Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36TM) Normative Values for the United States Dialysis Population and New Single Summary Score,” appear online at

The perspective, entitled, “Expanding the Patient’s Voice in Nephrology with Patient-Reported Outcomes,” appear online at

The content of this article does not reflect the views or opinions of The American Society of Nephrology (ASN). Responsibility for the information and views expressed therein lies entirely with the author(s). ASN does not offer medical advice. All content in ASN publications is for informational purposes only, and is not intended to cover all possible uses, directions, precautions, drug interactions, or adverse effects. This content should not be used during a medical emergency or for the diagnosis or treatment of any medical condition. Please consult your doctor or other qualified health care provider if you have any questions about a medical condition, or before taking any drug, changing your diet or commencing or discontinuing any course of treatment. Do not ignore or delay obtaining professional medical advice because of information accessed through ASN. Call 911 or your doctor for all medical emergencies.

Since 1966, ASN has been leading the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients. ASN has more than 20,000 members representing 131 countries. For more information, please visit or contact the society at 202-640-4660.

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